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My Story...

Annie...

Annie is 5 years old and has a very rare neurological condition called CASK gene mutation.

Her brain did not develop properly during pregnancy and she has multiple complex needs. She is deaf, blind, has epilepsy, feeding difficulties, severe developmental delay – she is unable to walk or talk. BUT she is also determined, happy and loves playing with sand and water, exploring books and “Hey Duggee”!

When Annie was born our lives revolved around hospital admissions and medical appointments, and as more and more things were found to be wrong with our little girl life became pretty tough for all of us.

When she was 2 years old a community nurse suggested visiting Zoë’s Place, and three years later this was the best decision we have ever made. Annie loves going to Zoë’s Place. The staff are amazing, so warm and welcoming. Annie enjoys the sensory room, soft play, rebound therapy and lots of cuddles and attention.

It gives us time to spend with her older sister Rosie, to take her to the park, help her learn to ride a bike, climb to the top of the climbing frame without constantly worrying about Annie – is she having a seizure, has she lost her hearing aids, have we got all the equipment we need to feed her, is she getting upset as she’s not moving in her wheelchair. If Annie stays overnight it also allows us to catch up on sleep as Annie wakes frequently at night and is still normally up by 4am!

As a family we have also been able to make lots of lovely memories with Zoe’s Place – a day out at the zoo, a visit to the Butterfly Farm and having fun at Easter and Christmas parties.

Zoë’s Place has made such a huge difference to all our lives and we will always be so grateful for the amazing care Annie has received.  

 

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